A Fat Chance

I suffer from intestinal lymphangiectasia, an extremely rare disorder which gave me a chance to change my life. A fat chance.

Location: Pisa, Tuscany, Italy

Medical student (Psychiatry), online and face-to-face facilitation, CoP practitioner, writer for and about mental illness (mainly in psychiatric rehabilitation, volunteerism and ICT) but also facilitation nonprofit and CoPs, person with mental illness in recovery.

Sunday, February 26, 2006

From Now On...

When you get diagnosed with Intestinal Lymphangiectasia (IL), you better not hope that doctors will help you, because most likely they won't. You'll be told blanket statements like

1. "stay on less than 30 grams of fat a day":
You will not be told that there are some (dietary) fats that are more digestible than some others (artificial) supplements.

2. "take MCT supplements"
You will not be explained that medium chain tryglicerides (MCT) also are naturally occurring in some foods (like butter, coconut, nuts and green tea).

There are many problems with such approach.

First off, dietary fats are not "all bad" for you even if you have IL. Some symptoms can be hugely ameliorated by eating foods rich in lecithin and omega3s, for example the pain and the shits. If you don't know anything about it, you could paradoxically eat a lot of saturated fats among those allowed 30 grams, and still have huge symptoms. If you know something more about it, you might need not be that restrictive in food intake and cooking methods. In other words, you might eat tasty foods that sit ok with you and aren't always the same few "balanced" dishes.

Some fats are essentials because, like vitamins, they cannot be manufactured by the body. When having restrictions in the amount of fats it's mandatory to know which fats can be safely avoided and which ones have not to be avoided.

MCT oil can give you diarrhea. There is absolutely no reason for you have to cope with that diarrhea, because MCT are not composed of essential fatty acids. If you can't tolerate them, don't take them.

Finally, you still have to eat food, and nobody teaches you its composition. You need to know what a food is composed of, how it is made, and how to make tasty, nutritional and safe food. You need to learn to avoid trans fats that can give you diarrhea and trigger IL.

Doctors won't tell you food information. Dieticians will usually put you on a diet. This blog is here to inform you and teach some tricks. But above all, use your brain, learn and be the master of your Fate.

Labels: , , ,

Snapshots of My Story

This is a long story. I have no formal day to give you as a starting point, so I'll set an arbitrary one for the first day reality broke thru full force.

June 1st 2004:
Sitting in the bathroom, my head spins. The pain is so much I can't even see the tyles in front of me, just the cracks between them. "I need to pass the brush into them" I think "Ok, when the pain goes away". What a weird intestinal bug, so painful. Painful shivers radiate from my belly, up to my neck and face, down to my feet plants. Right after that, the shits.

July 22nd 2004:
This is my first day out of the house since when my 12-16 daily shits began. I can't believe I'm venturing out. "I can't miss her, I can't miss her" That's all I can think.

February, 4th 2005:
I thought I was past the shits, I have felt better since September. But here they are again. Maybe it will go away again. It must be my gastritis or something, hence the nausea.

April, 8th 2005:
Curled up in the couch, in a ball of pain, I'm watching the Pope's funeral. "What is the meaning of this pain, Lord? What do I have to learn from it?". I wanted to go to Rome, but am still shitting over 10 times a day. I'm, again, afraid of getting out.

May, 12th 2005:
I'm afraid of what I'm shitting. It doesn't look "regular" to me, all that yellow stuff... my God I'm getting rotten. I need to do something. I thought I was getting better because I would shit less, and yet, here I am with all that weird stuff. My God.

August, 14th 2005:
Now I'm really scared. The pain, again, that stuff again. I showed it to mom, who turned white and said: "You have to call your brother's specialist, and you have to do it now".

September, 28th 2005:
The darn thing has a name and the name is intestinal lymphangiectasia.

Labels: ,